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Monday, January 31, 2011

I've been doing lots of reading and research into food/environmental links to cancer and cancer growth, as well as fighting cancer with food. Since Kol's diagnosis, I've learned about the role inflammation plays in cancer growth, the processes of apoptosis and angiogenesis, and how cancer cells subvert or take advantage of these natural processes to survive. I guess I need to know that I am doing as much as possible to increase Kol's chances of survival. I've always questioned things, never been content to accept it when people say "That's just the way it is." I need to understand why it is that way. If you can explain it to me, then I'm happy. I think I drive Kirk crazy sometimes when I'm talking to salespeople, because I really make them back up their claims, and explain themselves. However, in this case, I think that's a good quality to have.

I find it difficult to believe that there is nothing we can do, in addition to the radiation / surgery / chemotherapy, to combat cancer. I know the doctors aren't very supportive of dietary and lifestyle recommendations - there is little evidence to show whether it is helpful or not, so they dismiss the possibility that diet and lifestyle can influence both our chances of getting cancer, and of surviving it. At the very least, they are hesitant to make recommendations, because they don't have the research to back it up. Unfortunately, food and lifestyle choices can't be patented, so there is little demand for research into their connection to cancer. There is starting to be some research, but it's not enough to convince doctors of it's usefulness yet. I think, too, that people don't want to admit that they may have done something that might have contributed to their getting cancer. I know I don't really want to face the possibility that something I did, as Kol's mother, contributed to his cancer. Since the specific causes for brain cancer are still relatively unknown, I won't be too hard on myself yet, though. In the meantime, I want to know what I can to do improve his/our chances now.

I was given a book called Foods That Fight Cancer: Preventing Cancer through Diet. It is fascinating. It was written by researchers in Montreal who are researching the connection to food and cancer - and are finding that there are many foods that are as effective as pharmaceuticals at killing cancer cells in the laboratory. At one of the Brain Tumour Support meetings, someone recommended Anticancer: A New Way Of Life. This book was written by a doctor who discovered his brain tumour by accident during his research into brain functioning. I highly, highly recommend these 2 books to anyone with cancer, or to who knows anyone with cancer. Read them both. There is overlap between the two books, but they also complement each other well. They are full of suggestions of things we can do to boost the chances of survival. As I read these books, I became more and more impressed with the way God created all things to work together, and how things stop working when we deviate from those plans. There are so many different components of each food that we eat - chemical compounds, vitamins, minerals, acids, proteins, enzymes - many of which aren't even named yet, let alone studied. It amazes me how the components of one food all work together to strengthen the body, and keep us healthy. Not only does each food have vitamins our bodies need to stay healthy, but they contain all those vitamins in the proper proportions for our bodies to effectively use. Each food, in it's natural state, contains the enzymes our bodies use to break down that food. The problems come when food is processed and filled with chemical preservatives and fillers, when food is grown on depleted soil, when animals are force fed corn or soy rather than the grass that they were intended to eat. When this happens, the food we eat doesn't have the nutrients our bodies need, and we get sicker.

As a result of all the reading, we've been trying to change our diets, to reduce the risk of anyone else getting cancer and to improve Kol's chances of survival. We've incorporated lots of the recommendations from the books, and have cut out things like sugar, artificial sweeteners, processed food, white foods (flour, rice) and have cut back on red meat, eating only small amounts of grass-fed meat. It's kind of like living in the "olden days." Before Kol's surgery, I had begun to suspect that he was sensitive to gluten, and was going to try cutting out gluten in his diet, but we never got around to it. Just after Kolbjorn's birthday party, we started him on a gluten free diet. It was fun and challenging trying to learn (very slowly) about gluten free cooking and flours - like quinoa, chickpea, brown rice, millet. I still have lots to learn. Kol has been very co-operative, but not always happy about the changes. He was gluten free for almost 2.5 months, and ate a much greater variety of foods. We stopped the gluten free diet just before Christmas, because I thought it would be too hard to keep it up when we were away. I also wanted to see how Kol's body reacted to gluten once it had been cleared from his system. He's been eating more fruit, and has started enjoying smoothies again, which has been great, and has even been willing to try juiced vegetables. He doesn't always like the juices, but he'll at least try them. He's even started searching online on his own for recipes for gluten free pizza crust and gluten free, sugar free cookies. He doesn't like chickpea pizza crust. He likes Boston Pizza gluten free pizzas.

Modern medicine has come a long way. Doctors and researchers have learned lots, and are capable of healing and curing many diseases. I'm thankful for the doctors who were able to find Kol's tumour, and who were able to remove it. I'm thankful for the care that he has received. But, I think, in some ways, modern medicine has missed the point. They see that people feel better when they eat oranges, decide it's the vitamin C, and then people in their infinite "wisdom" start isolating the vitamin C, and learn that it's not as effective alone than it was when it was consumed with the rest of the orange. I love that God has given us everything we need to be healthy. We just need to learn (re-learn) what those things are, and to learn to trust in God's wisdom, not man's. It's a hard lesson, but I think it'll be a rewarding one.

Since I'm recommending books, one other book that I liked was Cancer: 50 Essential Things To Do. I found this at the resource center at the cancer clinic. The author interviewed thousands of cancer survivors - many of whom were only given weeks or days to live - about the strategies they used. This book is a collection of the dominant themes that arose from those surveys.

Kol is still on house arrest until we get bloodwork done on Wednesday, His white counts were slightly lower last week (on his day 7 treatment) than they have been after other cycles, so we have more G-CSF injections this month and we have to wait longer to get off of house arrest. Hopefully, they will be in the safe range by Wednesday. We have an appointment for a family portrait sitting on Thursday, so I hope he'll be able to go out by then.

Sunday, January 23, 2011

Well, that title sounds like a bullet point on a TPS report. Sounds very exciting, doesn't it?

I've noticed lately that a lot of people have been asking us how Kol is doing, which probably means that we haven't been posting enough updates, or that people have stopped reading the blog. Oops. The big problem is that it feels like there really hasn't been a lot of "news" about Kolbjorn, at least for us - we've definitely moved into the "new normal", where regular chemo treatments and doctors visits are just a part of regular life and not newsworthy. He's just started the 5th of 6 planned cycles of chemotherapy, and has been handling it extremely well, just as he's handled all the other treatments - as we've said to many people, if it weren't for his bald head you would be hard pressed to notice any effects from either the cancer or the treatment. He's currently back under "house arrest" while his immune system is low from the chemo, and if past experience is any guide, he should have another week or so before he gets to go out in public again. He's also been gaining weight, and now weighs more than he did when he went in for surgery - he's still underweight, but this is definitely a good sign.

The end of chemo is now in sight - the sixth (and hopefully) final cycle is set to start mid-February, and then he should have another MRI scan in March. After that? We don't know for sure. A lot will depend on the results of the MRI. We talked with Kol's oncologist a bit about this last week, and it sounds like if the tumor is gone, then it's simple - MRI scans every three months for the next couple years, then every six months for a while after that, then yearly for a while more. If the tumor isn't gone, then things are a little more unsure. There could be consultations with a neurosurgeon regarding whether or not to try to go back in for what's left. There may be alternative therapies to be considered. But until we see the results of the next MRI, it's all up in the air. We do know that we will get a bit of a break from treatments at least for a while. We should get a chance to escape for a family trip to Arizona in April, and possibly do a bigger family trip this summer.

So that's it for status. Now for milestones.

Unless I've messed up the math, this should be the 100th post on this blog. It's hard to believe that we've posted that much since we started the blog in the midst of the chaos and uncertainty waiting for Kolbjorn to get out of surgery back at the end of May 2010. This got me thinking about milestones and anniversaries, and I realized that 2011 will see a number of significant milestones and anniversaries that our family will be observing this coming year:

Annika will celebrate her first birthday in a few weeks.

Julianna will become a teenager in a few weeks.

Kolbjorn's sixth and (hopefully) final cycle of chemo will start next month.

I will become ancient and decrepit (40 years old, that is) in a few months. Strangely enough, when my dear wife passed that milestone she simply became more beautiful, elegant and wise - funny how that works.

We will observe the one-year anniversary of Kolbjorn's initial diagnosis and hospitalization in late May.

Birgitte will (hopefully) have been seizure-free for a year in July.

So, on the occasion of this 100th blog post, I just want to again say thank-you to everyone who has prayed for us, everyone who has given us encouragement through comments, emails, cards, letters, gifts, phone calls, and conversations, everyone who has honored and blessed us with acts of service, and everyone who has put up with the occasional meandering, off-topic, and erratic posts here on this blog. We are proud and thankful to have you with us on this journey. Here's to 2011, and all the milestones and celebrations ahead!

Thursday, January 13, 2011

Since the new year began, I've been wanting to write a re-cap of the year, a summary of 2010, and follow it up with our hopes, dreams, prayers for the new year. Every time I think about it, though, I draw a blank. I don't know what to write. How do I say that our lives were turned upside down within just a few hours? How do I honour our experience, validate the pain, the grief, the fears, without sounding like I'm just whining, like I'm a wimp, or not trusting in God? How do I enumerate the joys, the blessings, the answered prayers, without glossing over the fact that there were some incredibly painful times? And how do I say all that without giving the impression that I'm comparing our family's struggles to someone who has "really" suffered?

We've compared this journey through childhood brain cancer to a roller-coaster several times, and it does seem to be an apt analogy. It describes some of the emotional aspects of this journey well, however I sometimes wonder if it is the best analogy over all. A roller coaster, with all of its ups and downs and twists and turns, is a known entity - at least to the track designer and to the operators. Once on the ride, no one can get off, and the ride will follow the preset path until it's over. Nothing, no one can change the ride once it's built. Imagine a roller coaster in a dark room - like one of the ones at Disneyland. The riders know that there will be surprises along the way, but have no clue what they will be. The cars may start going up, and continue going up, and up. They know that at some point, the track will take them back down, but they have no idea if that will happen immediately, or if the ascent will last for 60 more seconds. When the cars do start to descend, will it be a steep descent, or a gradual one, with twists and turns along the way? A roller coaster has a set plan, with twists, turns, ups and downs that are a surprise to the riders, and those on the coaster have no way of altering the course, or of getting off. The only thing they can control is their own attitude. They can choose to enjoy it, to stick it out and make the best of it even if they don't love it, or choose to hate it, and wish that they had never gotten on. Maybe some of us do all of those things at different points along the way. A roller coaster has a specific course course, and a definite ending. When it is over, so is the turmoil and you can choose to ride it again or not.

Another possible analogy is that of a boat on the sea. We were traveling over relatively calm and beautiful waters. We had our dreams, our maps all laid out before us, like pages of a book yet to be written, with our hopes, dreams, and our imagined future. A future where we would watch our children grow up, make new friends, learn about the world, make a difference in their corners, graduate from high school, get married, have children, (hopefully in that order) find fulfilling jobs, and, we pray, serve and glorify God in all that they did. That changed in just a few hours. No one expects life-threatening illness. No one expects to come face to face with the possibility of losing a child. But we did face that reality. Our storm hit. We didn't choose the turbulence, it came, the reason why doesn't really matter. We sailed into a storm. But, unlike on a roller coaster, we can alter our path when we sail into turbulence on our boat. We can't get off the boat, but we can choose how we respond to the storm, and those choices help determine the direction that the boat will take.

Some of the dreams that we had, that we had imagined, will never be. The things we took for granted, that we just assumed would happen may never occur. It is all uncertain now. I know there are never any promises and that any one of us could die tomorrow, but we do come to expect certain things out of our lives, things that we all take for granted. We can't take our future for granted any longer. We have to grieve for the loss of the future that we thought we had. We have to grieve for the loss of the child we had before cancer changed his life, and our lives, forever; before chemo drugs and radiation treatments forever altered Kolbjorn's body, causing untold side-effects and damage to that tiny, trusting boy's body; before we were forced to make decisions no parent should ever have to make; before the certainty of brain damage, memory concerns, more surgeries, vision problems and learning disabilities; before the possibility of stunted growth, late side effects, secondary cancers; before we began to live with the constant knowledge that the tumour could very quickly come back at any time. Our boat sailed into a storm and tossed us all around and at times it felt like we would drown. We have dreams that will not come true, and stories that won't be written. We need to validate that pain. It is a different kind of pain than when we lose a loved one, but it is still a loss. We needed to grieve for that lost future - and still do.

We've seen and met so many people in the last few months who are in pain. Some who have lost their marriages, homes, families as a result of a child's cancer. We've seen children who've died, who have lost parents. We've seen people with chronic illness whose suffering goes unnoticed, because everyone else is too busy to pay attention. These are obvious hurts - easy to see, and painful. But what about those who are hurting in silence? One thing that Kolbjorn's illness has shown us is that we are not the only ones hurting - we all have pain to deal with - our own struggles, worries, illnesses, relationship problems. Some are suffering much more than we are, and others are suffering less. Everyone's hurts are just as valid as ours.

When my dad died, I sometimes wondered if it would have been better to lose him quickly - like in a car crash, or from a heart attack. Alzheimer's took him from us slowly - one piece at a time, over 17 years. It felt like we were constantly grieving the loss of another aspect of him. His memories, his confidence, his insight, his skill with numbers, his abilities, his personality. By the time his body died, there was very little, if any, of the man I remembered from my childhood remaining - except the shell, his body was still my dad's. The person, the personality that I loved, was gone. In some ways, the funeral felt like just a formality - a validation of the loss we had been experiencing for years. Now it was socially acceptable to grieve, because finally the body was gone - but I had already done my grieving, in silence. I realize now that a sudden death wouldn't have been easier. It would just have been different. The regrets would have been different, but it would still have been painful. A loss is a loss.

Society tells us that grief is wrong. That we should be strong, and get on with our lives, to let it go, to put the past in the past, and move on to our future. To go back to work, be productive. Grief is a negative emotion, and we are told that we should focus on the positive. So we bury our pain. But the positives have much less meaning when we have not experienced pain. We take the positive for granted. Like an addict, we need more and more pleasure for it to have meaning. When we're grieving, our bodies are telling us to slow down, to rest, to be introspective - to nurture ourselves. When we nurture ourselves, we take the time to enjoy the small things - the things that we don't even see when we're trying to stay busy to avoid feeling pain. To mourn. To say that yes, this hurts, I hurt. There is always someone out there who is facing a greater tragedy, and it feels that by admitting that I am grieving, I am saying that my pain is more important than theirs. This is so wrong. There is an epidemic of depression in our corner of the world. Maybe, just maybe, it's because we don't allow ourselves to hurt, and as a result we are missing out on the joy that can be found in the mundane. The joy in holding our children's hands, watching them sleep, seeing them smile, hugging them, rocking them to sleep, hearing their hopes and dreams for their future.

When the chaos of the storm hit, fear came too - fear of losing our child, fear of serious side effects, fear for his future and ours. Fear. Society tells us that grief is wrong, yet the negative emotion of fear is encouraged. We are surrounded by messages of fear. We're told to fear terrorists, child molesters, kidnappers, the man next to us on the airplane, Muslims, teenage boys. We should be afraid of genetically modified organisms, sugar, chemicals in our food, of potential oil shortages, food shortages, power outages. Grief doesn't sell. Fear does. Fear in the short term is good. It reminds us we're alive, and encourages us to fight or run if we need to. But God tells us not to be afraid. It proves we're not following Him. Fear also robs us of the joy that can be had today.

So do not fear, for I am with you; do not be dismayed, for I am your God.I will strengthen you and help you; I will uphold you with my righteous right hand.Isaiah 41:10

Surely he will save you from the fowler's snare and from the deadly pestilence.He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart.You will not fear the terror of night, nor the arrow that flies by day, nor the pestilence that stalks in the darkness, nor the plague that destroys at midday.Ps. 91:3-6

I like the analogy of the boat, because we weren't helpless when the storm came. We weren't at the mercy of course designers. We had choices. We could, and did, cling to God, knowing he would keep us on the course that is uniquely ours. We don't know when the tossing will end. I do know that we don't need to be afraid, however, because I choose to let God be in control. We didn't lose our son, and for that we'll be forever grateful. We still have today. We still have time to create memories together, and we're doing just that. We have new stories to write.

Kol said today that this will be the year of change. That is what I pray for. Good changes.